Web Link Disclaimer
This website provides various links to other websites on the Internet which are maintained by third parties - 'linked sites'. The Genetic Support Council of WA (Inc) takes no responsibility for the accuracy of the information contained on any of the sites listed on this page. Information accessed through the World Wide Web is of varying levels of quality and accuracy and should be discussed with your health care provider NOT used as a substitute for professional health care.
Genetic Support Groups
Genetic support groups are an important part of health-care development for individuals affected by genetic conditions, their families and health care professionals.
Acoustic Neuroma Association of Australasia, WA Branch
Provide information and support for individuals who have, or have had, acoustic neuromas or other tumours affecting the cranial nerves. Also provide information on individual rehabilitation for physicians and health care personnel interested in the treatment of benign tumours.
Website: http://www.anaa.org.au Addisons Disease Association Inc., Australian
Supply up to date information to people with Addison's disease and a caring network to give support for those living with the disease.
Website: http://www.addisons.org.au Alzheimer’s Australia WA Ltd
Represent and support individuals with dementia and provide carers with an opportunity for giving and receiving support, sharing experiences, and gaining knowledge and information in a small, informal group setting.
Website: http://www.alzheimers.asn.au
Androgen Insensitivity Syndrome Support Group
Provide support, information, education and advocacy services for people affected by AIS and other intersex conditions.
Website: http://vicnet.net.au/~aissg
Arthritis Foundation of WA
Including: Osteoporosis WA, The Ankylosing Spondylitis Support Group, The LINK Group, Fibromyalgia Support Group and General Arthritis Support Groups.
Foundation aims to reduce the incidence and disabling effects of arthritis, osteoporosis and related conditions.
Website: http://www.arthritiswa.org.au
Arthrogryposis Support Group
Offer support to each other and new and relevant information on Arthrogryposis Multiplex Congenita. The support Group may appeal to you if your child suffers from Hip Dislocation, Club Feet as well as those with Arthrogryposis.
Website: http://www.taag.org.au
Additional Website: http://www.amcsupport.org
Autism Association of WA
The association aims to advance the personal development, equality of opportunity and community participation of people with Autism.
Website: http://www.autism.org.au
Autism Spectrum: ASPECT
Batten Disease Support and Research Association, Australian Chapter
The organisation aims to support families affected by Batten disease, create awareness and provide information as well as helping to fund research into Batten disease.
Website: http://www.battens.org.au
Blepharophimosis, BPEI Family Network.
A Yahoo group is available with members including parents of children who have BPES, some children or youngsters, and several adults who get in touch via the bulletin board or directly with each other.
Cancer Council Helpline
The Cancer Council WA Helpline provides information about cancer related issues and support services for individuals, families and communities affected by cancer.
Website: http://www.cancerwa.asn.au
Cardio Facio-Cutaneous Syndrome Support - WA Group
Provides information and support to parents of children with Cardio Facio-Cutaneous, Noonans or Costello Syndrome.
Website: http://www.cfcsyndrome.org
Charcot-Marie-Tooth Association Australia Inc
The association aims to distribute information related to the welfare of people with CMT, promote contact with others, advocate for the development of facilities and services for those affected, and support vital research.
Website: http://www.cmt.org.au
CHARGE Syndrome Association (WA Branch), Australasian
Support is provided to families through networking with others who are affected.
Website: http://www.chargesyndrome.org.au
Chromosome 18 Registry & Research Society (Aust) Inc
A lay advocacy organisation composed primarily of the parents of individuals with one of the chromosome 18 abnormalities.
Website: http://www.chromosome18.org
Cleft Palate and Lip Society WA (Cleftpals)
A voluntary group of parents, relatives and professionals interested in the welfare of children born with cleft related conditions.
Website: http://www.cleftpals.org.au
Coeliac Society of WA Inc
Aim to create awareness of coeliac disease within the community and amongst health professionals and provide education on the gluten free diet and support for individuals with coeliac disease, dermatitis herpetiformis and others who medically require a gluten free diet.
Website: http://www.wa.coeliac.org.au
Cornelia De Lange Syndrome Australasia Support Group
The group support the families of children with Cornelia de Lange and support research to identify the genetic cause of the syndrome. They aim to assist understanding between groups with similar issues and encourage further development of other national organisations around the world.
Website: http://www.cdlsaus.org
Congenital Adrenal Hyperplasia Support Group Australia Inc
Provides support and information to families and those affected by Congenital Adrenal Hyperplasia.
Website: http://www.cah.org.au Congenital Diaphragmatic Hernia (CDH) CHERUBS Australia
The group consists of families expecting children with CDH, families who have surviving CDH children and families who have lost their babies to CDH.
Website: http://www.cdh.org.au
Costello Syndrome Support Group
Aim to provide support and information on resources and condition management.
Website: http://costellokids.com
Cri du Chat Support Group of Australia Inc
Provide support, information and contact to families who have a family member with Cri du Chat syndrome in Australia, New Zealand and other countries of the Southern Hemisphere.
Website: http://www.criduchat.asn.au Crouzon Support Network’s - Online Support
An online support group for individuals and families who are dealing with Crouzon Syndrome and other craniofacial anomalies. A place to share experience, mutual support, inspiration, and information.
Website: http://www.crouzon.org
Cushing’s Disease Support Group WA
The group provide emotional and psychological support for individuals with CD.
(Website not available)
Additional Website: http://www.cushings-help.com
Cystic Fibrosis WA
Aim to contribute to the social, physical and emotional wellbeing of those affected by CF and assist in the promotion of research.
Website: http://www.cysticfibrosis.org.au/wa
Cystinosis Support Group, Australian
The group endeavour to try to find families in Australia and New Zealand affected by Cystinosis, provide support to newly diagnosed families and put them in touch with others in similar situations within their state.
Website: www.cystinosis.com.au
Deaf Society Inc, The Western Australian
The objectives of the society are to empower Deaf people to achieve equality of opportunity and independence in all aspects of life.
Website: http://www.wadeaf.org.au
Diabetes WA
Vision: freedom from diabetes through research, education (on prevention and managing diabetes), advocacy and support.
Website: http://www.diabeteswa.com.au
Down Syndrome Association of Western Australia Inc
Aim to support the community in developing the potential of individuals with Down syndrome to lead a valued life and provide support and information to individuals with Down syndrome and their families.
Website: http://www.dsawa.asn.au
Dyslexia SPELD Foundation WA Inc
Provide a range of services and family support throughout Western Australia to enable children and adults with specific learning disabilities to realise their greatest potential.
Website: http://www.dyslexia-speld.com Dystrophic Epidermolysis Bullosa Research Association Western Australia (DEBRA)
Offers advocacy, financial and emotional support and networking opportunities to families who are living with EB.
Website: http://www.debra.org.au
Australian Dyspraxia Association Inc (ADA)
Provides family support and community education to help those suffering from dyspraxia to reach their full potential.
Website: http://www.dyspraxia.com.au Ectodermal Dysplasia Support Group (WA Branch) - ozED
Provide support and referral advice to all persons and families that are diagnosed with Ectodermal Dysplasias. They also provide advice and information to health care professionals to assist in provision of quality care being provided to people and families affected by the condition.
Website: http://www.ozed.org.au
Ehlers Danlos Support Group, Australian
A fun place to be where people can share information and support each other.
Website: http://edsaus.ning.com
Ehlers-Danlos Foundation of New Zealand
Provide emotional support for sufferers of Ehlers-Danlos Syndrome and HMS, their spouses and family members. They distribute information amongst the medical profession and general public.
Website: http://www.edfnz.org.nz
Epilepsy Association of WA Inc
Aim to educate and support individuals with epilepsy, their family, friends and the community and assist individuals with epilepsy to integrate successfully into the community, allowing them to enjoy a full and productive lifestyle.
Website: www.epilepsywa.org.au
Even Keel Bi-Polar Support Association Inc
Aims to reduce the stigma associated with mental illness and empower individuals who have Depression and Bi-polar Disorder. Friendship and support is provided to individuals and families as well as information and community education. Also provides support for schizophrenia and other related disorders.
Website: http://www.evenkeel.org.au
Fabry Support Group Australia (FSGA) Inc
Provide support to those affected directly or indirectly by Fabry’s disease throughout Australia and aim to increase recognition, awareness and understanding of Fabry’s disease, its effects and potential solutions.
Website: http://www.fabry.com.au
Facial paralysis – Kids With Facial Paralysis Online Support Group.
A group of parents of children born with facial paralysis, facial palsy, moebius syndrome or facial differences. Share your stories and meet new friends. There are links to Bell's palsy and facial paralysis.
Website: http://kidswithfacialparalysis-moebiussyndrome.webs.com
Familial Hypercholesterolaemia Support Group WA
Aims to improve information, communication and support services for families with FH in Western Australia and prevent premature deaths caused by hight cholesterol and cardiovascular disease.
Fragile X Support Group of WA Inc
Promote awareness of appropriate educational and social opportunities for individuals with Fragile X syndrome and support appropriate planning for the future lives of individuals with Fragile X syndrome. It provides family contact and social interaction between members and their families.
Website: http://www.fragilex-wa.websyte.com.au
Freeman-Sheldon Parent Support Group (FSPSG) - International
An international self-help organization for individuals and families touched by Freeman-Sheldon syndrome. They are an information resource for affected individuals, healthcare providers, educators, and the general public.
Website: http://www.fspsg.org
Haemochromatosis Society of Australia Inc
Consists of volunteers working from home and utilising technology to bring this information to you, so distance is no barrier! Provide information and education on Haemochromatosis.
Website: http://haemochromatosis.org.au
Haemophilia Foundation WA Inc
The group provide support, information and advocacy to individuals and their families and carers with haemophilia or von Willebrand disease and promote a better lifestyle for individuals with the condition.
Website: http://www.hfwa.org
Additional website: http://www.haemophilia.org.au
Heart Kids WA Inc
Including: Di George syndrome/Velo-Cardio Facial syndrome (VCFS) and VATER Association (also known as VACTERL Association).
Supports families and children through hospital visits to families, coffee meetings, information evenings, fundraising events, family and kids camps.
Website: http://heartkidswa.org.au
Hemihypertrophy Support Group
Provides information for individuals or families who are affected by hemihypertrophy or related conditions.
Website: http://www.hemisupport.com
Hermansky-Pudlak Syndrome Network Inc. (New York)
A volunteer self help, not for profit support group for persons and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorder such as Chediak Higashi Syndrome.
Website: http://www.hpsnetwork.org
Hidradenitis Suppurativa Foundation, Inc. (HSF)
A non-profit public benefit corporation dedicated to improving the quality of life for individuals and families affected by Hidradenitis Suppurativa.
Website: http://www.hs-foundation.org
Huntington Disease Association (Inc) WA, Australian
Aim to provide the best quality of care for individuals with Huntington disease, those ‘at risk’ of Huntington disease and their carers and families through advocacy, information, referrals and crisis support.
Website: http://www.wa.ahda.asn.au
Jeune Syndrome Association Inc., Australian
Mission: raise awareness and understanding of this rare condition throughout the wider community and raise funds to increase research.
Website: http://home.vicnet.net.au/~jeunesyn
Kabuki Syndrome, SAKKS Supporting Aussie Kids with Kabuki Syndrome
Aim is to raise awareness of this rare condition and help other families feel less alone.
Website: http://www.sakks.org
Learning and Attentional Disorders Society of WA (LADS)
Provide up to date information, support and referral advice to adolescents, adults and parents of children with learning difficulties and attention disorders. They aim to increase awareness and acceptance of the condition and improve the quality life for affected individuals.
Website: http://www.ladswa.com.au
Leukodystrophy Support Group Inc (ALDS), Australian
Provide assistance and information to those affected by Leukodystrophy and supporting research into Leukodystrophy.
Website: http://avoca.vicnet.net.au/~leuko
LQTS Support Group of WA Inc
Raise awareness, provide information about Long QT Syndrome and support the families of children and young adults who are genetically predisposed to sudden death due to heart rhythm abnormalities.
Website: http://www.sads.org.au
Lupus Group of WA Inc, The
Act as the principle resource for lupus patients, their families, doctors and the community to provide educational awareness, support and facilitation of research activities.
Website: http://www.lupuswa.com.au
Marfan Support Australia
The group provide support and information to individuals, family members and the health care community about the syndrome.
Website: http://www.marfan.net.au
Mental Illness Fellowship WA Inc
The fellowship provides support services, education and information to individuals, family and carers. They aim to raise community awareness to reduce the stigma and ignorance associated with schizophrenia and mental illness and influence legislation, policy and procedures used by governments, health systems and service providers.
Website: http://www.mifa.org.au/mifwa
Metabolic Dietary Disorders Association (MDDA), Australia
A self-help, not-for-profit, family-support group that assists members and their families with the complex issues in dealing with metabolic dietary disorders.
Website: http://www.mdda-australia.org
Motor Neurone Disease Association of WA Inc
Support research into Motor Neurone Disease. They aim to ensure that people with Motor Neurone Disease, their carers families and support networks have access to the resources required to maximise their lifestyle and to increase awareness of Motor Neurone Disease within the community, government and medical profession.
Website: http://mndawa.asn.au
Mucopolysaccharide & Related Diseases Society
Provides support and information to families and other interested people. They promote a partnership between families and professionals and community awareness of the mucopolysaccharide condition and its impact on families and carers.
Website: http://www.mpssociety.org.au
Muscular Dystrophy Association of WA Inc
Provide support for individuals with muscular dystrophy and other neuromuscular conditions, their carers and families. They provide advisory, advocacy and individual and family support services and aim to advance research and provide investigative counselling and, diagnostic services.
Website: http://www.mdawa.asn.auAdditional Website: http://www.mda.org.au - Provides fact sheets on MDs and Neuromuscular Disorders including Chacot-Marie-Tooth disease, Duchenne type muscular dystrophy (DMD), Becker type muscular dystrophy (BMD), Friedreich's Ataxia, Facioscapulohumeral (FISH), Kugelberg-Welander disease and Werdnig-Hoffamann disease.
Myasthenia Gravis Friends & Support Group WA Inc.
Myasthenics, family and friends gather quarterly for coffee meetings with occasional speakers presenting information on subjects of interest.
Website: http://www.myastheniawa.info
Nager and Miller Syndromes - Foundation for Nager and Miller Syndromes (FNMS) International
An international support group dedicated to helping those affected by these two similar genetic conditions which involve severe facial and limb anomalies, but does not usually affect intellect. The group serve as a clearinghouse of information and link families seeking support, hope and advice.
Website: http://www.nagerormillersynd.com
Neurofibromatosis Association of Australia Inc
Provide up to date information gathered from national and international sources and support individuals with NF and their carers by bringing families and individuals together. They aim to promote awareness of the condition within the community, particularly amongst medical practitioners and other health care workers.
Website: http://www.nfaa.org.au
Osteogenesis Imperfecta Society of Australia, The - WA Contact Available
Offer information and support to individuals and families affected by O.I., encourage and support research and provide public and professional education and create awareness.
Website: www.oiaustralia.org.au
Pompe Community
A US website providing comprehensive information about the rare disease to the Pompe community as well as resources and some support.
Website: http://www.pompe.com
Porphyria Association Australia
The Porphyria Association is a voluntary non profit organisation, providing information and resources on Porphyria.
Website: http://www.porphyria-australia.org
Prader-Willi Syndrome Association of Australia Inc - WA Branch
Provides information for those who have had a recent diagnosis of PWS in an infant or toddler as well as general information about PWS across all age groups. A list of books and publications are also available.
Website: http://www.pws.asn.au
PXE Support Group WA
To provide information and support to Pseudo Xanthoma Elasticum (PXE) sufferers and their families by supplying the latest updates on information about PXE.
Website: http://www.pxe.org
Raynaud’s Syndrome Support Group WA
The group support individuals living with this condition and aim to promote greater awareness and educate individuals and health professionals about this condition.
(Web site not available)
Additional Website: http://www.raynauds.org.uk
Rett Syndrome Association of WA
The group collect and disseminate accurate and objective information regarding the cause, identification, treatment, prevention and cure of Rett syndrome, and support affected individuals and their families.
(Web site not available)
Additional Website: http://www.rettsyndrome.org
SADS Australia (Sudden Arrhythmia Death Syndromes)
Assist families and friends of those affected by the Long QT Syndrome and other arrhythmia disorders. They provide information and educational resources to the lay public and to health care providers in order to promote early diagnosis and treatment.
Website: http://www.sads.org.au
Senses Foundation Inc WA
A non government, not for profit organisation formed from the amalgamation of the Royal WA Institute for the Blind and the Deafblind Association. Their vision is that Western Australians who are blind or deafblind live a life of meaning and purpose as valued individuals in the community.
Website: http://www.senses.asn.au Short Statured People’s Association WA Branch
Support individuals of short stature and families with their assimilation into society with the goal of equality of educational and social status and of employment opportunities.
Website: http://www.sspa.org.au
Shwachman-Diamond Syndrome Australia (SDSA)
A non-profit organisation dedicated to assisting families through mutual sharing of experiences and working together with the medical community to improve treatment for children and adults with this syndrome.
Website: http://www.shwachmandiamondsyndrome.com.au
Sjögren’s Syndrome Support Group WA
The group support individuals with the condition and promote awareness and educate the community and health professionals regarding diagnosis and treatment.
(Web site not available)
Additional Website: http://www.sjogrens.org
Stargardt's Australia
Provide information and support for those with the disease, their parents and friends, including news and developments regarding treatment, assistance in coping with the disease and helping others understand what a person with Stargardt's is experiencing. It has a forum to allow people to share experiences and discuss problems with each other.
Website: http://www.stargardts-au.org
Stickler Syndrome Australia Support Service (SSASS)
Small group who produce newsletters of varying frequency depending on demand. Internet contact preferred.
7 Noojee Court, Kallangur Qld 4503
Ph: (07) 3886 0665
E-mail: ssass@hotkey.net.au
Additional Websites: www.stickler.org.uk & www.sticklers.org
Spina Bifida Association of WA Inc
Provide support for individuals with spina bifida and their families.
Website: http://www.sbawa.asn.au
Thalassaemia Association of WA Inc
Assists individuals with Thalassaemia and related conditions to obtain a better quality of life through education and direct medical assistance and aim to educate Western Australians about Thalassaemia.
Website: www.thalassaemia.org.au
Thyroid, Australia Ltd
Support organisation for people with thyroid conditions as well as their families and their friends. It is a voluntary organisation whose founding members have suffered or been affected by various thyroid conditions and who wish to help others in similar situations.
Website: http://www.thyroid.org.au
Treacher Collins Connection - global community
Mission: To connect, educate and support the global community of people with Treacher Collins syndrome by providing medical and networking resources, while imparting to our children the strength, courage and importance of not allowing a facial difference to define who we are.
Website: http://www.tcconnection.org
Trisomy and Related Disorders of WA (SOFTWA), Support Organisation for
The group helps and support families dealing with a child with a rare chromosomal disorder including Trisomy 18 (Edwards Syndrome), Trisomy 13 (Patau Syndrome), Trisomy 9 and Trisomy 22 .
Website: http://www.trisomy9.org/support
Tuberous Sclerosis Society Inc, Australasian
Aim to educate, research and create awareness of this condition within the community and provide support for affected families.
Website: http://www.atss.org.au
Turner Syndrome, Association of Australia Ltd (WA)
The association assists individuals and families to have healthy and well adjusted lives and educates and helps people gain a greater knowledge of what Turner syndrome means.
Website: http://www.turnersyndrome.org.au
Unique In Australia (Chromosome Disorder Support Group)
The group works to ensure that the public at large are aware of rare chromosome disorders and informs, supports and alleviates the isolation of anyone affected by a rare chromosome disorder by raising public awareness.
(Web site not available)
Additional Website: http://www.rarechromo.org
Vasculitis Foundation (VF) - International
The only international organization for patients with Vasculitis. They provide patients and family members with practical information and coping strategies to live successfully with Vasculitis.
Website: http://www.vasculitisfoundation.org
Velo-Cardio-Facial Syndrome Foundation of NSW
Families and Professionals caring for people with VCFS / Shprintzen Syndrome / Di George Syndrome.
Website: http://www.vcfsfa.org.au
Von Hippel-Lindau Syndrome (WA Contact)
Provides information relating to the condition and to the VHL Family Alliance and assists in contacting other Australian VHL Family Alliance representatives.
(Web site not available)
Additional Website: http://www.vhl.org
Williams Syndrome Association of Australia.
C/- Association of Genetic Support of Australasia
66 Albion St, Surry Hills, NSW 2010
Ph: (wk) (02) 9211 1462, (hm) (02) 9332 1361 Fax: (02) 9211 8077
Website: http://www.facebook.com/group.php?gid=86960635460
Wolf-Hirschhorn Syndrome Association (AWHSA), Australian
A voluntary not-for-profit self-help organisation dedicated to educating parents about Wolf-Hirschhorn Syndrome and networking them with other parents of affected children. They are currently in contact with over 30 families from all over Australia and New Zealand.
Website: http://home.vicnet.net.au/~awhssg
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Related Community Support Organisations
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Activ Foundation
Aim to provide a better life for people with intellectual disabilities and their families through understanding, commitment and support.
Website: http://www.activ.asn.au
ARAFMI Mental Health Carers and Friends Association
Provides support, information and education to the community, particularly relatives and friends of individuals with a mental health problem.
Website: http://www.arafmi.asn.au
Asthma Foundation of WA Inc
The foundations objectives are to raise awareness of asthma in the community, raise funds for asthma, research and provide educational and support services to individuals with asthma, their families, carers and health professionals.
Website: http://www.asthmawa.org.au
Australian Association for Families of Children with a Disability (AAFCD)
To provide information, support and advocacy for families of children aged under 25 with disability in all States and Territories of Australia.
Website: http://www.aafcd.org.au
Bonnie Babes Foundation Inc (WA Branch)
The foundation counsel families who are grieving after the loss of a baby. It has a 24 hour, 7 day per week grief counselling lines in Australia. The Foundation also assists in education to health professionals.
Website: http://www.bbf.org.au
Breast Screen WA
The organisation provides a high quality, FREE screening mammography service for women in WA 40 years or over with no breast symptoms.
Website: http://www.breastscreen.health.wa.gov.au
Carers Association of WA Inc
The Carers Association is the peak body representing the interests of all carers in Western Australia. A carer is an individual who looks after a family member or friend who has a mental or physical illness or a disability, or who is Frail Aged. To actively enhance the quality of life of all carers in WA. They provide counselling services.
Website: http://www.carerswa.asn.au
Clinical Genetics, Australian Resource Network for
Support the clinician’s role in genetic services at point-of-care. This website is established to provide useful and up-to-date information for clinical genetic practice.
Website: http://www.arcgenet.org.au
Crisis Care Support Service - Perth Home Care Services Inc
Offers short-term emergency support for main carers of frail aged, or people with a disability in the event of critical illness, carer's stress or any other urgent incident. It is specifically for incidents that occur without warning and result in the main carer being unable to continue to care for their family member. Support in the home can be provided for up to three consecutive days.
Ph: 9204 7801
Website: http://www.phcs.org.au
Crohn's and Colitis Association, Australian
Mission: generate and foster awareness and educational programs targeted at persons diagnosed with IBD, their families, health professionals and the general public.
Website: http://www.acca.net.au
Disability Abuse & Neglect Hotline, National
This is a FREE service that takes reports of abuse and neglect of people with a disability.
Phone: 1800 880 052, TTY 1800 301 130 (between 8am-8pm every day incl. weekends).
Website: http://www.disabilityhotline.org
Disability in the Arts, Disadvantage in the Arts, Australia
Our focus is on creating opportunities and significant beneficial social change with people who have a disability and/or mental health issue living in local communities across WA.
Website: http://www.dadaawa.org.au
Disability First Stop
An innovative service that assists people and their families to get the help they need when a person is newly diagnosed as having a disability. They direct people who have had an accident or have been recently diagnosed, towards the appropriate agencies to give them and their families the support they need.
Website: http://www.disabilityfirststop.asn.au
Ethnic Disability Advocacy Centre
The objectives are to promote, advocate, support, inform, refer, network, lobby and train people with disabilities from culturally and linguistically diverse backgrounds and their families and carers.
Website: http://www.edac.org.au
Eye, Lions Institute Western Australia
Provides specialist clinical services,medical training and community services.
Website: http://www.lei.org.au
GAIN – Gynaecological Awareness Information Network Inc.
GAIN is a community-based organisation of dedicated women who have endured the trauma of being diagnosed and treated for gynaecological conditions.
Website: http://www.gain.org.au
Genetic Services of Western Australia
This service provides a state-wide comprehensive and fully integrated clinical, and laboratory, genetic service with equitable access to enable informed choice in the prevention and treatment of genetic conditions and reduces the burden of genetic conditions in the community. It provides both clinical and counselling services.
Website: http://www.kemh.health.wa.gov.au/services/genetics/
Health Consumers’ Council of Western Australia Inc
The Health Consumers' Council is an independent community based organisation, representing the consumers' 'voice' in health policy, planning, research and service delivery. The Council advocates on behalf of consumers to government, doctors, other health professionals, hospitals and the wider health system.
Website: http://www.hconc.org.au/
Hereditary Spastic Paraplegia Research Foundation (HSPRF)
A health promotion charity that aims to raise funds for HSP directed research, promote the establishment of gene testing facilities and maintain databases of affected individuals and aims to become a focal point for neurologists, scientists, gene counsellors and academics as well as sufferers.
Website: http://www.hspersunite.org.au
Kalparrin Centre, The
Including: Parents of Children with Disabilities
An organisation committed to providing practical and emotional support to families of children with special needs, who require ongoing care and support, who are under the unique stress of awaiting diagnosis or whose diagnosis is unknown. They provide disability related self-help or support groups.
Website: http://www.kalparrin.org.au
Kidney Health Australia
A non-profit organisation with a mission to be the lead organisation promoting kidney and urinary tract health through research, advocacy, education and health service excellence.
Website: http://www.kidney.org.au
Mums
A national parent to parent organisation for parents or care providers of a child living with a disability, rare or not so rare disorder, chromosomal abnormality or health condition. Their mission is to provide support to parents through a networking system with other parents in similar situations.
Website: http://www.netnet.net/mums
National Breast Cancer Centre
Strives to reduce mortality and improve the well-being of women diagnosed with breast or ovarian cancer.
Website: http://www.nbcc.org.au
Neurological Council of WA Inc, The
A collaborative organisation which functions as the peak body in neurological disorders in Western Australia, and currently represents the, common interests of 29 neurological organisations.
Website: http://www.ncwa.com.au
Office of Population Health Genomics, Department of Health Western Australia
The objectives of this organisation is to minimise the negative impact of genetic disease on the health and wellbeing of Western Australians and facilitate the integration of genetics into all aspects of public health research, policy and programs with maximum benefit to Western Australians and minimal costs to individuals.
Website: http://www.genomics.health.wa.gov.au
Parent To Parent New Zealand Inc
Provide information and support network for parents of children who have special needs, disabilities and health impairments from common conditions to the rarest of conditions. The services are free to families in NZ and network with organisations and families overseas.
Website: http://www.parent2parent.org.nz
Primary Immune-deficiency Network Ltd. (APIN), Australian
apin@apin.com.au
(Website not available)
Rare Disease Community, The
NORD has partnered with ClinicaHealth to create a free, unique online community service for rare-disease patients, their families, and , caregivers. It will be, a place whe, re people can f, ind and su,, pport , one another, share stories, and build a network of on, line friends.
Website: http://nord.clinicahealth.com
SIDS and Kids Western Australia Inc
Incorporating Stillbirth and Neonatal, Death Support (SANDS) WA Inc
A community based organisation that can immediate and ongoing support to individuals and families affected by perinatal death (miscarriage or stillbirth or neonatal death). The organisation works to educate the community on the impact of infant death.
Website: http://www.sidsandkids.org/wa
Speak Easy Association Western Australia
The association provide advocacy and support to people who stutter and their families.
Website: http://www.speakeasy.org.au
